Three Days Left

Three days and we’ll be back on lock down in the hospital. Three days to figure out food, clothing, and cleaning for us in that PICU space where she won’t have a private bathroom… And we might be lucky if we get a window. I know that the Ronald McDonald house is nearby, but I don’t want to be that far away in case I’m needed. Yeah yeah, freaky parent.

But this is will all get easier as we get used to going in for these 5 rounds. By the fifth round, we’ll have the system figured out 🙂

In preparation for these rounds, Jesse had an MIBG and CT Scan on Wednesday. The doctor for the sedation until looked at me yesterday morning while we were waiting, “When’s her bone marrow scan?” “Tomorrow” “Hmmm, let me see what I can do… We shouldn’t have to sedate her twice.”

I really didn’t expect oncology to have time for the bone marrow scan on Wednesday. I told the doctor if they would great, if not I really appreciated that she tried.

Amazingly they had time! I can’t tell you how much I appreciate her making that call, and the doctors in clinic agreeing to make it happen. It saved her from having to go hungry ( or hangry, which would have been the more likely scenario) two days in a row.

Jesse slept all afternoon… This is never good. At 2am, she was still going strong. (Mike stayed up with her… I was beat from being up at 4:55am)

This morning it was evident she’d stayed up because she had Oscar the Grouch beat.

She and I returned to clinic for labs, urine sample, and to get the shot I’ll be administrating for the next 3 days… Then for 5 or 6 days after we leave PICU.

Our doctor was also able to tell us that her tumor is the same and her bone marrow tested negative for cancer cells. Yeah on the bone marrow. The scans are a little of a bummer because well, who wouldn’t want that thing smaller. Mike asked me if it was still cancer… This is something I’ll need to ask our doctor.

The padding of her diaper must have messed with her head. That child didn’t pee from 8am until 1pm even after having 3 juice boxes! We tried to get her to pee in a hat on the toilet… She tried, but I think that was too freaky for her.

I was so excited she went, but it wasn’t enough 🙁

Our nurse was great and hooked her up to an IV to help her. And finally at 2pm, we got to head out. She apologized for not doing that sooner, but how could we have know that Jesse would attempt to imitate a camel!

Traffic was horrid on our way back. As we cruised up towards the Lee Hall exit traffic started braking. I was in the left lane so I could see an upside down car with smoke rising ( might have been steam… But I don’t know). Others were stopping to help who ever was in the car. I can’t tell you how scared I was that a child was in there. Funny how my mind went to that thought.

I couldn’t just drive by… I figured that if there was something I could do it had to be done.

A tractor trailer truck driver blocked the road… To help protect the car and everyone from further injury. Smart guy!

That man was so lucky from what I could physically see. And looking back, the people probably shouldn’t have tried to pull him from the car, but it looked like it might catch fire… So I can totally understand the rational.

I only saw a cut to his forehead. The guys pulled him from the back seat and he was able to walk away from the car. I don’t know if he was thrown there… But he was so lucky. I gave the people my first aid kit, and then since I had Jesse’s medicine that needed refrigeration and her in the car, I headed on.

There was a fire department person stopping as I left. I really hope he is going to be ok.

It is so important to be patient and not to follow to closely when driving. Having to make that trip from Williamsburg to Norfolk makes me so aware of that. And I am amazed by how many people stopped to help and work together.

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